My Journey to halt/end my psoriasis

[Fred]

Wintrman I have removed the doctors name as we don't publish professionals names on Psoriasis Club as it could get us into trouble.

As for your letter content it's a better approach in my opinion, though I would have left out the internet bit as my experiance is that not many doctors like patients comparing them with what is available on the internet. 

[Caroline]

I do respect your opinion. However, fixing the skin, doesn't fix what's going on inside my body. How does a topical fix that? How does it lower the white blood cell count so that my immune system isn't attacking my skin and internal organs.? Am I missing something here? I have no faith in topicals. I just got finished with dovobet, a steroid, which is only a short term use topical. Wouldn't this steroid be the same thing?? If it's a short term measure, then why start it at all?
Sincerely,
Wintrman

I 100% agree with you Wintrman but unfortunately a dermatologist has to follow protocol. We have seen it so often where people would rather go for something like a bio, but that rarely happens until you have failed on one or two oral treatments.

You could refuse the topical's, but I don't think many dermatologists would start a new patient on an Oral treatment. You could try asking for light treatment and explain that you refuse to use a topical, it's worth a try.

Failing that you are going to be left with self treatment with something like DMF or Natural. *If you wish to go that way these may help:

Natural Treatments For Psoriasis

Dimethylfumarates and Psoriasis

Fred,

Wintrman is in Canada. They don’t have DMF over there. (Well I think they will have it for MS, but don’t realise it can be used for Psoriasis)

I do understand the feeling of you, Wintrman, of the senselessness of going for another topical, which is bound to fail.
Your psoriasis is at a point where topicals do not work anymore. But.. indeed guidelines dictate (also idiotic, how guidelines can dictate, but it happens here too) that you have to follow a path.

I understand it also because I myself would never use methotrexate ever again, just like Fred, sometimes you pass stations and that is what you are doing too, I think. Haven’t read your letter yet, have to get to cooking right now, so that will be later.

Caroline

[Caroline]

 
Thirdly, isn’t psoriasis an auto immune disease? I mean I respect what a topical might do for me on the skin, but the white blood cells are attacking my bodies organs as well with the liver being first and foremost. At least that is what I have read from reputable sites. Am I wrong here? I don’t know for sure, because, the internet isn’t the most reliable place to find info, but I feel that the sites I did check out, are reliable. New England Journal of Medicine, et al.
 

No… Psoriasis is no auto immune disease. If it was, than there would be anti-bodies detectable in the blood, which is the essential marker for auto immune diseases. But with Psoriasis you cannot find this kind of markers as they are not there. Which by the way makes the diagnosis of Psoriatic Arthritis also very difficult.
Still Psoriasis “is” a system disease which has an effect on the immune reactions in the skin. With psoriasis patients we see a surplus of a number of cytokines in the body, a.o. IL-23 and IL-17, these cytokines cause the problems. The real cause that this is happening is still subject of research and guessing. It is said that genetics are involved, but even people without genetic preconditions can get it, i is said there are triggers, stress, bacterial infections, etc. It is even said the cause is somewhere in the cells (my favorite).
The problems that are related to psoriasis can be in a wide range as these cytokine disturbances can cause trouble in several places in the body. The so called co-morbidities. So it certainly makes sense to put a halt to these cytokines, which certainly is not being done by the topicals, so the risks on comorbidities remain there if you don’t do some systemic medication.

[jiml]

You have my sympathy as you are at your wits end and just want something that works for you understanderbly. But like everyone has said the dermatologists the world over seem to follow the same protocol of making you fail on treatments before they move you forward to the next step
I blame your doctor for not referring you earlier and for prescribing steroids for so long. It's a shame your dermatologist won't accept that you have been on steroids without success for ages and are worried about skin thinning and other side effects from steroid ointments
Hopefully your letter will be well received and she will reconsider and move you away from creams sooner than 8 weeks

[Sheila]

Well...next in the story. I talked to the derm. When I told her that the new prescription wasn't good for the head areas she insisted it was okay. When I pushed on saying I have psoriasis on my eyelids and in the ear canals, she said that was okay too. When I asked my pharmacist he was very hesitant and advised me against  using this POWERFUL steroid on or near the eyes or the auditory canal. 

Having said that, My GP has asked to see me on Monday, the day after I had blood tests done. I am super anxious about that. And during my appointment I will discuss at length the wisdom of using this new ointment and see if he will advocate on my behalf with the derm to see if she will change her mind and if she doesn't, then I will see if he can hook me up with a dermatologist in Winnipeg. It's a 2.5 hour drive but I am not going to be pushed around on this issue. 

It's MY body and I have the RIGHT to say what goes in or on my body. End of story!! I am super pissed right now. The way this derm talked to me caused me to have 2 flashbacks in the last 24 hours. I haven't had that many flashbacks in 4 months! She has triggered me bad. 

Anyways....thats my plan. Thoughts anyone??

[Fred]

Well...next in the story. I talked to the derm. When I told her that the new prescription wasn't good for the head areas she insisted it was okay. When I pushed on saying I have psoriasis on my eyelids and in the ear canals, she said that was okay too. When I asked my pharmacist he was very hesitant and advised me against  using this POWERFUL steroid on or near the eyes or the auditory canal. 

Having said that, My GP has asked to see me on Monday, the day after I had blood tests done. I am super anxious about that. And during my appointment I will discuss at length the wisdom of using this new ointment and see if he will advocate on my behalf with the derm to see if she will change her mind and if she doesn't, then I will see if he can hook me up with a dermatologist in Winnipeg. It's a 2.5 hour drive but I am not going to be pushed around on this issue. 

It's MY body and I have the RIGHT to say what goes in or on my body. End of story!! I am super pissed right now. The way this derm talked to me caused me to have 2 flashbacks in the last 24 hours. I haven't had that many flashbacks in 4 months! She has triggered me bad. 

Anyways....thats my plan. Thoughts anyone??

You are right "it is your body" and only you can make the decision on the best way to go.

If you are not happy with your dermatologist then yes you should find another one even if that does mean travelling, it sounds like you are not going to get on with the current one so make the move now before you start any treatment.

Good luck with your GP on Monday.

[Sheila]

You have my sympathy as you are at your wits end and just want something that works for you understanderbly. But like everyone has said the dermatologists the world over seem to follow the same protocol of making you fail on treatments before they move you forward to the next step
I blame your doctor for not referring you earlier and for prescribing steroids for so long. It's a shame your dermatologist won't accept that you have been on steroids without success for ages and are worried about skin thinning and other side effects from steroid ointments
Hopefully your letter will be well received and she will reconsider and move you away from creams sooner than 8 weeks

Oh but the doc says it's a new and more powerful steroid which is why I DONT wanna use it on my eyelids and in my ear canal. I don't want the pain and burning sensation that comes along with the use of this new med.

[jiml]

It's a shame as your dermatologist should be aware that steroids don't treat the underlying condition
The fact its a new and more powerful steroid should give her cause for concern that you need to use it in sensative areas like ears and eyelids most steroids (and I don't know about these ones) state on the information sheet that they shouldn't be used around sensative areas. My suggestion if you can't get a better decision and don't go for the 2.5 hour journey just use it on your trunk and arms and legs and coconut oil on the delicate areas
Also ask what the plan is after 8 weeks as that's as long as you should use steroids does she plan to give you something to tackle the underlying cause

[Sheila]

It's a shame as your dermatologist should be aware that steroids don't treat the underlying condition
The fact its a new and more powerful steroid should give her cause for concern that you need to use it in sensative areas like ears and eyelids most steroids (and I don't know about these ones) state on the information sheet that they shouldn't be used around sensative areas. My suggestion if you can't get a better decision and don't go for the 2.5 hour journey just use it on your trunk and arms and legs and coconut oil on the delicate areas
Also ask what the plan is after 8 weeks as that's as long as you should use steroids does she plan to give you something to tackle the underlying cause

I hear ya my friend! What about after 8 weeks?? That is PRECISELY why I don't even want to start. 8 weeks of using something that may or may not work and not in all places either.What is the bloody point?? She is simply not getting it and hopefully my GP will help me out in regards to this issue. Still boiling mad about this. She has caused me days of unnecessary stress. And sadly I am seeing my psoriasis getting worse. A quick scratch behind the ear caused bleeding. A few new spots and an increase in plaque. Can't wait for this to be over.

[D Foster]

On my opinion, after having so many creams, lotions and potions the only way to go is biological drugs and the one that works for me is Stelara. That works on the IL 12 and IL 23 which interacts with the IL17 and stops the storm and stops the body over reacting.
I have used MTX and it did work for me ,not completely and it did have side effects but at the time, before biological drugs,it was a good compromise. By the way Enstilar is a good one for the ears.